Friday, October 12, 2012

A lupus patient's definition of "doing nothing"

In looking back over my posts regarding my mini-flare, I think I've learned something. My definition of taking it "slow and easy" is kind of a joke. Don't get me wrong - I DID take it down a notch while I was under the weather. I had to. But my definition of ratcheting back and having a slow and restful week is a bit of a misnomer. I still did everything I had to do - took care of the kids, dropped off Deirdre at school, picked her up, made lunches, put the girls to bed for naps, picked up the house, paid bills, stopped at the grocery, picked out baby and birthday gifts for friends, went to the post office, blogged, etc., etc., etc. Johnny was a HUGE help - and I couldn't have gotten through the week without him. But it is mildly amusing to look back and realize that when I say I did "nothing", as a mom, a business owner, and a writer, I did the least amount possible, which is still a whole heck of a lot.

And I'm sure most lupites are with me on this. In my travels around the world and across the country, speaking at various lupus events and book signings, the folks I've met with lupus are anything but the "sit back and relax" type. They're go-getters, they're fighters, they're women (and men) who take charge, take action, and get results. Many of them are parents, a slew of them have careers, and all of them are determined to figure out how to live well, despite lupus.

So what can we learn from this? Perhaps this driven, high-achieving group can take heed, and realize that their definition of "downshifting" might look like other's "high gear". Perhaps we can learn that taking time off to rest, relax, and truly do nothing is an okay thing to do. And that we'd actually look and feel pretty good doing it, even if just once in awhile.

So I invite you to try it some time. Who knows? We might just enjoy life in the slow lane. Most likely not, but it won't kill us to dabble!

2 comments:

I told my rheumatologist about my last two weeks or so (just a trip to Seattle from DC for work for 5 days where I walked all over the place, then to San Francisco for the weekend for my brother's engagement party--even more walking and probably more wine than recommended, then a full week of commuting 30 miles each way to a busy week at work. You know, the usual!). Then, as if this is not at all connected, told him I was having a lot of pain and swelling, especially in my feet/ankles. He looked at me like I was crazy, then upped the prednisone dose. Great.

Oh, so typical, isn't it? :) When you take a step back, it becomes so clear. But in the midst of it - it's like we're almost incapable of making the connections. We state our case, provide the evidence, but then flake out on solving the crime!

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.